Helping Patients Cope With Death

To the Editor:

“At the End, Offering Not a Cure but Comfort” (“Months to Live” series, front page, Aug. 20) presented a detailed, sensitive look at one aspect of palliative care — hospice care — but could leave the impression that palliative care is only for patients who are dying. That is not true. It can help patients who will live years after they receive a diagnosis of a life-threatening or chronic illness.

Too many patients fail to receive the pain relief, emotional support and guidance in navigating the health care system that palliative care provides because they think it comes at a terrible price: giving up on a cure. In fact, palliative care can help patients better tolerate treatments as they recover.

Patients battling serious illnesses should talk to their doctors about palliative care. It’s possible to have comfort and a cure.

Gail Austin Cooney
West Palm Beach, Fla., Aug. 20, 2009

The writer, medical director of Hospice of Palm Beach County, is president of the American Academy of Hospice and Palliative Medicine.

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To the Editor:

Your article portrayed the challenges a New York doctor faces when discussing end-of-life care options with dying patients, and the preference of many for palliative rather than aggressive care. But the article does not address the legal obstacles faced by families in this state when making such decisions for dying, incapable patients.

In most states, when a patient is dying, lacks capacity and did not leave an advance directive, doctors can seek guidance from close family members about how aggressively the patient would want to be treated. In New York, unless the patient left clear evidence of a decision to forgo treatment or appointed a health care agent, the law demands continuing life-sustaining treatment — even when the patient probably would oppose it, the family opposes it and the doctors advise against it.

The Family Health Care Decisions Act would give close family members greater flexibility to make these decisions. The State Senate passed the bill in July; the Assembly had passed an earlier version, but did not get to the new bill before its summer recess. It needs to pass the bill promptly when it reconvenes.

Robert N. Swidler
East Greenbush, N.Y., Aug. 21, 2009

The writer is general counsel to Northeast Health, a not-for-profit health care system.

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To the Editor:

Dealing with patients near the end of life is more a part of the art, rather than the science, of medicine, and as such it is an intensely personal matter that varies from doctor to doctor. In the more than 40 years that I practiced internal medicine, I was guided by three precepts regarding the care of the dying patient:

Tell the truth with mercy.

Never destroy hope.

As much as possible preserve human dignity.

Telling the truth without destroying hope gives the patient a chance to organize his life while facing the finality of death. Not only does he have an opportunity to determine what is important in his life, but he also has time to prepare his family for his death, say goodbye and, not mentioned in your article, make his peace with God.

Hospice care is an ideal way to preserve human dignity because it removes the burden of caring for the physical needs of the patient from the immediate family. The hospice organizations with which I dealt supplied nurses, aides and physicians who were compassionate, caring and effective. Almost without exception, my patients and their families were happy with and consoled by their help.

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Palliative care certainly deserves a place in whatever health reform bill is formulated by Congress and the Obama administration.

John A. Wood
Water Mill, N.Y., Aug. 20, 2009

The writer was a clinical professor of medicine at the College of Physicians and Surgeons at Columbia University.

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To the Editor:

Thank you for your good description of palliative medicine. Dr. Sean O’Mahony exemplifies the specialty’s exquisite attention to patient and family suffering, preferences and needs. This quality is what really allows difficult conversations — including about “bad news” — to take place, and effective comfort to be provided.

At the end of the article, however, you note that the doctor doesn’t expect to have further contact with the patient’s spouse. Actually, one would hope that Dr. O’Mahony or his staff did follow up in some way. A critical element of palliative care is bereavement support for the family after a loved one dies.

Stuart Green
Summit, N.J., Aug. 20, 2009

The writer is behavioral sciences director at Overlook Hospital.

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To the Editor:

While reading about palliative care, I thought of a way to challenge this “death panel” talk. Simply withdraw all proposals for elective consultations on end-of-life care, and inform the public that such doctor visits will not be covered by Medicare — as they are not, now.

Then watch the outrage build, as people recognize the benefits of such care and regret that they cannot have it free.

My wife died of ovarian cancer nearly five years ago. We had consultations with two such practitioners, and they were invaluable, as were the living-will decisions we had made earlier. We had excellent insurance, in addition to my Medicare, so we never had to think about paying. But many less fortunate Americans do not.

Few people anticipate these things before they are confronted with them, and then it is too late, especially if they come with an additional price tag at the worst possible moment.

Kenneth R. Johnston
Princeton, N.J., Aug. 20, 2009

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To the Editor:

Many patients with catastrophic or degenerative illness will describe their state as being worse than death itself. As a psychologist and a neutral advocate for patients navigating the complexities of end-of-life care, I am able to address their principal anxieties — about being alone and the loss of agency — in ways that reduce suffering and unwanted treatments.

Our use of psychologists in end-of-life care is dismally low. Leaving us out of current health reform proposals would increase both suffering and costs.

E. Martin Walker
Ridgewood, N.J., Aug. 20, 2009

The writer is director of the Later Lifespan Development Center at the William Alanson White Institute.